“Feeling Connected”............……..Don't travel alone!

As with many other illnesses, Parkinson’s has a stigma (especially for those still working) that some people wish to avoid. They don’t tell anyone of their condition and brush off comments about tremors and other symptoms as something of a temporary nature due to a flue or rough night. They try to avoid social functions and may even work longer hours to cover up productivity issues. But like other illnesses it may be unavoidable to admit to those close to us the true nature of our condition. Even in Alcoholics Anonymous members protected by anonymity will eventually come out of the closet to firstly trusted group members and later to others in their social circle.

Personally I don’t think a PDAnonymous model using only first names in meeting and continue to be private about our condition. So what is the alternative? Let a little air out of the ego and prepare to join your community. Seek out similar people or a local support group that you can talk to. If you are on Facebook there are a number of discussion groups with thousands of members. Sit down with your family and/or close friends and tell them your story of diagnosis and treatment. If you have not yet done so, assemble a personal health care team that meets your specific needs. Don’t forget, you may not meet another person with the exact same symptoms, they say that “if you know one person with PD, you know one person with PD”.

You should be feeling a little better already once you have assembled your health care team and informed your inner circle of family & friends. That “Feeling Connected” starts to chase away the feeling of being alone which is said to be much deeper than loneliness. But you can go further and get even more connected by getting involved with activities to support your new found community. My wife immediately felt a connection to other caregivers in our group by volunteering to help with our Pie & Vinyl Sale. After a few hours in the kitchen making pies for the event she felt connected to other ladies in our chapter. It also made her want more connectivity as she expanded her knowledge of our reality through her new friends in our community.

The Parkinson’s Peterborough/Kawartha Chapter has chosen the theme of “Feeling Connected” for 2020. This is our 40th anniversary of service to our community and we will run our 25th SuperWalk fundraiser in September, 2020. Our community continues to grow but even though we are more connected electronically than even, we seem to be losing that personal more intimate connection that was developed with one-on-one conversations in the past. The telephone, when it was just a phone forced that one-on-one conversation that normally opened with a greeting and followed up by asking something like “how are you doing?”. The impersonal world of e-mails and messaging may be much more efficient but is it sustaining the emotional connection between us?

Our challenge this year will be to reach out in a more personable manner to reconnect with our members and supportive individuals in the community. Please join us in creating that “Feeling Connected” to everyone touched by Parkinson’s so no-one will suffer alone.

Time to unwind.............On a Beach!

Taking time off to unwind is something I have never done well. But this year my wife and I both were in need of getting away so we made it happen. Taking advantage of a seat sale on West Jet and an old friend’s apartment in Saint Marteen we even did it on a bit of the cheap, music to my ears!

Say it ain't so Joe!.....................................Yoga?

Some may say I have slid over to the dark side by leaving the boxing behind to try something of a more gentle nature. No more banging of the heavy weights or deep grunts replaced by the soft music and the calm voice of the instructor as she leads us through our “yoga practice.” But after a bit of research I took on a six week challenge to see what impact yoga could have on my current health challenges. And the impact has been impressive. Here are the most noticeable changes over the past 5 weeks.

1. Sleep! Yes I could now sleep through the whole night with one little trip to the washroom sometime during the night. But not waking up every hour anymore or simply going to the couch when returning to sleep was impossible. This was almost immediate but needed a few more classes before I could bet on it consistently.

2. Balance! Standing on one foot with the leg stretched out back was something I only did with the wall beside me to hold on to. But I’m getting better and will soon take a spot in the class not up against the wall.

3. Breathing! I have always been a shallow breather for what ever reason, but the emphasis on proper breathing caught my attention. I now apply the same techniques while walking or any other activity.

4. Posture! On my last visit to my chiropractor, she remarked how much better my posture was with an obvious loosening in my lower back.

5. Energy! Just have more energy and flexibility with less PD symptoms in general.

Will do more research on how to make yoga more accessible to the PD Community.

Winter is no Excuse........................Keep Walking!

Last winter I had a few bad falls on the icy trails and reduced my walking drastically for a few months. This winter I plan to keep up my activity by taking all of the necessary precautions. So today being the first real wintery walking day, I reviewed my check list of things to do.

1. Put winter cleats on my hiking boots. These are easy to purchase at most Canadian Tires for under $20. I need the largest size to fit on my size 12 boots!

2. Get out the woolies. That includes mitts, neck warmer or scarf, a touque (eh), thick socks and layers of hoodies and wind breaker or a good quality ski jacket. I bought a high quality ski suit over 15 years ago and the pants become the final clothing item to add later in the winter.

3. If you have been Nordix walking poles keep them around. Pull of the shoe like tips and expose the sharp pointed tip which with provide you the stability on slippy trails. You still need to keep a sharp eye out for ice patches that may be covered in light snow or so thin that you barely notice them until…….!

4. Sunglasses are essential when doing a circular trail or doubling back. I know the point on my trail that I am looking directly into the rising sun. Beautiful but tricky if I didn’t put on my glasses a few minutes before.

5. Last suggestion is carry a cell phone for the unfortunate misadventure when you slip and fall and just don’t think you can get up or make it home. I only phone my wife once after a fall from my bike on loose gravel (but that is previous blog).

If it’s just you that should do it but I travel with my two dogs and need to load up on dog treats and poop bags before we start our 2 km walk every morning!

BE Bigger Than Cancer?.....Yes! .... 20 years clear!

It often strikes me on how time flies but yet certain events seem like yesterday. It was 20 years ago that I was diagnosed with Colon Cancer (NPHCC) of a hereditary nature. My sister Mary had passed a number of years earlier from the same cancer in her early 40’s after the birth of her fifth child. I was in my mid 40’s looking at the same diagnosis but was persuaded by those around me to search out the best treatment with no delay in getting this treated. I was lucky to have some great connections in the province I was employed by and switched doctors for more immediate attention. After a formal diagnosis on Dec. 24th, I used the holidays to research better surgeons and was connected to one of the best for an appointment in early January.

On January 8th I met her for the first time and she confirmed the need to act quickly and remove the tumour and assess my condition as to future treatment. Through a cancellation, I was able to jump the cue and be on the table by the 14th of the same month. This was my first time for major surgery so the little details like having my chest and abdomen shaved clean, being cut from the breast bone to below the belly button and being neatly put back together with a row of staples on my stomach were new experiences. Recovery was eased with the use of the morphine pump and tested by the pushy nurse who made me walk in the hall every day. The staples were later removed in front of young interns by the head nurse, the joys of a teaching hospital.

On February 14th I was on my way to chemotherapy for the next 6th months. One week on with 5 days of treatment, than 3 weeks off. Then back again for 5 days etc till mid July (6 rounds of treatment). The last cycle sent me back to the hospital with a near fatal impact from the chemo drug used. It would seem that the dosage should not be only calculated on the patient’s weight but take into consideration the limitation of one’s liver. Mine had already had it’s share of working overtime during a few years of overindulgence. Now there is some speculation that the chemo may well be linked to my Parkinson’s Disease (PD) as my loss of smell was blamed on the cancer treatment while also recognized as one of the first signs of PD.

So after a colonoscopy on Friday, Nov. 1st this year I am given another 3 years to believe the cancer is in remission which allows me to focus on PD as my health challenge. Not quite the retirement dream I had hoped for but I will play the cards I am dealt to the best of my ability. Instead of prayers or even good wishes, please join us in our fight to beat this disease (or any other ones) by taking action, donating or volunteering. We may win together or I (and many others) will pass before we finish the fight.

My Summer Report

From my previous posts you can see that I had some lofty goals for this past summer focusing on my personal lifestyle, habits and behaviours. So how did I do? Not bad but not done either. Some of the not to continue habits have been pulled back or redirected rather than fully eliminated. It was primarily my compulsion for “picking” antiques and collectibles that was to stop but was downsized instead. Still going to a few auctions on-line and live but buying much less. Also sold or donated a lot of inventory with three categories style in stock. Have kept my olympic collectibles to be sold somehow during the 2020 Summer Olympic season, continued to refresh the Parkinson;s LP inventory for the Pie and Vinyl sale for next year and somehow accumulated a few hundred (thousand) marbles. Why marbles, maybe because the are shinny, colourful and interesting? Why not, they seem fun. The goal is to sort and prepare almost everything for a Collectibles Sale in the spring and see what I can make of it.

As I am writing the is blog, I am actually typing with both hands which is a great improvement for my left hand. One of my original indicators of my PD was the inability to productively use my left hand for typing. But with a variety of exercises everything seems better. Although the boxing has been great for the last year, I have taken a break to try Yoga. And when they say Hot Yoga is HOT, believe me it is. Although Gentle Yoga is my primary class, I have been doing Hot Yoga once a week. I have been stretching and sweating muscles that I didn’t know I had. My biggest benefit is sleeping for the first time through the night only to be nudged awake at 5am by Charlie our golden retriever. This allows me to complete my morning routine to get him and his Mom (Riley) out for our morning walk (2.4km). With the help of my Nordic Walking Poles, I retain good posture and pace while mindfully walking, even purposely spreading my toes within my shoes and ensuring a good stride. This is a major accomplishment for me to get back to walking after a number of falls while walking and cycling this spring.

Supporting our local Parkinson chapter continues to be my main focus with additional effort in the search for healthy foods. I have found that a tea from a combination of mushrooms (not those ones!) have replaced coffee and is a great cold drink during the day. A blog will follow on this shortly. Looking forward to attending the Porridge for Parkinson’s Event in Toronto this weekend to see if it can be duplicated in a smaller market like Peterborough.